Chemo to Palliative to Hospice....

Chemo to Palliative to Hospice....

Weight holding - 

Sleep pretty good

Pain hard to manage

Constipation a roller coaster

Tumors continuing to grow

Emotions a wreck

We celebrated the decision to not do chemo by taking a bucket list trip to Acadia Park in Maine.  We ate lots of lobster (well, actually, my stomach did not have much capacity, but for me, I ate a lot.)  We enjoyed gorgeous scenery, bonfires and wildlife... And because we went with some dear friends, we were insured lots of giggles and grins as well as great conversation.   

Layovers in Boston allowed us two special visits - one  with a healing pastor who prayed over me.  It is really hard to know if it was of any help, but we continue to hold out hope...

We also got to see a sweet friend who has been like a niece to me, and her husband - A great God appointment!  

Coming back was a welcome home to reality of weariness and continuing to wrestle with fear and pain....as tumors grow, which they do every day, pain increases.  As pain increases, fear increases...

It is a never ending circle. I am thankful for God’s promises to always be with me and never let me go.  

While we were gone, my ascites ramped up. (Ascites is the fluid build-up in your gut)  In my appointment with my palliative care doc, we talked about having it withdrawn with a needle (paracentesis) or putting in a little drain or trying to manage it with things like lasix.  Fortunately, the pills worked and i could avoid the paracentesis (whew). But constipation continues to rear it’s ugly head - just to keep me from being bored.  

It has been shocking to me how long it has taken to get back into the groove of having some energy...I am still quite exhausted from the trip, taking many naps.  Naps, of course, preclude doing fun things like getting together with friends - which is a bummer.   I am running out of time....last week I only had time for one fun outting - the rest  of my time was used up in napping and meetings.

This weeks meetings have been with hospice care...  I thought the chemo or no chemo decision was hard - HA!  Yes it opened blocks of time, but those blocks were used up by hospice....

Basically what happened is that my palliative care doc, who is absolutely wonderful, pointed out that I  should have things in place so that if I need help in the middle of the night, I do not have to go to the ER like last time.  Having things in place means signing up for hospice.  We do believe that we will have the best care for me, through hospice, but the psychological fall out is a little rough...  for the first time i am really feeling like i am running out of life to live...

I understand being a walking miracle—been there—and was astonished by it and thankful for it—but i am now fighting for energy, for a wish to eat, for calories, for pounds, for joy...

It is extremely difficult to live hunting for all of these things.   I don’t have energy for anything -things like getting up to walk across the room to get something just is not there...it affects how you view life and what you take on.

I do not want to whine, and i’m teetering dangerously close...

This is a window into my world-i have no energy and I’m fighting hard to keep my spirits up, with limited success.  I am staring death in the face...a scary, sad feeling.  

We have stayed busy with hospice stuff, but when the quiet comes, fear creeps in big time...

Reality like a hospice bed and oxygen coming tomorrow make you aware that time is ticking away...

All of this is why i have not written—words are absent—what can i say?  I am losing my battle and it is scary...i start to write and fall asleep....

 

Thanks to all of you who have sent flowers and notes and texts and cards...who have been supportive despite the silence...we appreciate it so much...

I am coming to realize that God probably will not do a healing -probably will not bring immediate relief.  It will probably be my lot to go home to Heaven early as so many do ....and basically i am fine with that-we just were thinking it would be a bit further down the road... like years. I feel a little young to be going... now though - I’m feeling really worn out from the pain and trying to manage everything ...

God is good - all the time!  Prayers are appreciated.  Thanks for checking in!

Psalm 46:1-3 God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging.

Proverbs 18:10 The name of the Lord is a strong tower; the righteous run into it and are safe.

Nehemiah 8:10 Do not grieve, for the joy of the Lord is your strength.

Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.